Help Murphy Breathe Easier

Since she was just two years old, Murphy Swiedals (formerly Murphy Stidham)
has suffered with a genetically inherited condition called COPA Syndrome; an extremely rare immunodeficiency disease where patients typically develop arthritis and interstitial lung disease, along with a myriad of different symptoms.

Three years old.

Her mother died of the same disease when Murphy was only 14, and Murphy almost died too. Thanks to the wonderful doctors at MAYO Clinic and a selfless organ donor, she has just received a double lung transplant, but she has a long and difficult journey ahead and her road to recovery is just beginning.  

A chance to continue living is a wonderful thing, but Murphy still needs help. It will be a year or more before Murphy is able to work again, and in the meantime the bills never stop coming in--not just medical bills but the day-to-day ones which we all have. 

I suggested again and again that Murphy let me set up a GoFundMe for her but she always resisted. She wants to work and she is a proud young woman. But with the reality of all of this staring her in the face she finally and reluctantly agreed to let me, and that is why I am making this appeal today.

Below I've written about my friendship with Murphy: How I met her and how she impacted my life. Please take the time to read it and open your hearts. 

Murphy and Me

Murphy came into my life exactly  two days after my business partner and dear friend  for over twenty years passed away. It was on a Friday that Stuart poked his head in my office and said; "Have a good weekend, buddy." The next day he was dead of a massive heart attack.

For our little company it was a tremendous blow, and the following Monday our weekly company meeting became a tearful tribute to Stu.  It was also Murphy's first day on the job. So for Murphy it's the  first day on her first "real" job in her life and everyone there is a mess.  She must have wondered what she'd gotten herself into, but as we dried our own eyes and looked around I noticed something....she was crying right along with us even though she'd never even met Stuart.

The next few weeks were a blur and so I really didn't say much to Murphy or even really try to get to know her. I didn't hire her, and interns came and went at our company...I didn't realize that she was a full time employee and thought she was just another intern, and I didn't keven know that she was sick at the time.  I passed her in the hallway and said hello, but I called her by the name of the last intern who'd just left.

"My name is Murphy." she said.

A couple of days went by and I did it again: "Hi Michelle." She glared at me. "It's Murphy," she scolded. I apologized and made a mental note not to let it happen a third time. I came in the next day and Murphy had gone and gotten one of those nametag stickers you see at office parties and such so that people can mingle without having to ask each other for names all of the time. So I rounded the corner to the break room and there is Murphy grinning ear-to-ear and pointing at the sticker on her blouse:

"Hello, my name is MURPHY;” it read. We both burst out laughing.

OK, point taken and lesson learned. I never forgot her name again after that, and as I was (technically) her boss, I loved the fact that she'd had the gumption put me in my place in such a funny way. That began my friendship and admiration for this twenty-something young woman, and as the months went by I came to think of her almost as one of my own daughters.

I learned that Murphy was smart. I learned that Murphy was tough. I learned that despite that toughness, Murphy had a heart of gold. And I learned that Murphy was willing to work her butt off.

I also learned that Murphy had a constant companion, her tiny dog Lucy who was ever at her side (or at least in her purse). She told me that in order to convince her parents to let her get Lucy she'd done a lengthy PowerPoint presentation explaining the benefits of the breed and how she could take care of her...they relented. We'd never really had a policy on people bringing their dogs to work but in the case of Murphy bringing Lucy, no one questioned it.  Lucy became our company mascot.

But as time went on I also learned something else. That Murphy was fighting a lifelong battle against a really dreadful and rare genetic disease.

In medical terms it's called COPA Syndrome; an immunodeficiency disease where patients typically develop arthritis and interstitial lung disease with pulmonary hemorrhage.

In human terms it meant that her lungs were failing. Over the next year her condition continued to worsen. At first I wasn't even aware that anything serious was wrong. She never complained or said anything about the battle she was fighting. But as the weeks went by it was obvious that things weren't right. Her office was two doors down from mine and coughing more and more frequently I'd hear her coughing...not just a little bit, but bouts of sustained coughing, the kind where the cough is unproductive and doesn't stop.

It was heartbreaking hear her coughing fits and to think that this amazing young lady, who should have nothing but positive things in her future, would be dealing with such a horrible situation.
 
And as her condition worsened Murphy had to start bringing an oxygen tank to work with her every day in order to breathe. It was about the size of a scuba tank...huge and heavy. She had it on a cart that she'd drag around behind her but she'd struggle to get it in and out of her car when coming to work. And as my office is right next to the front door when I saw her walk past I'd get up and help her get it into the backseat of her car. It was just a little gesture but something that made me feel good to do for her.

Murphy prepares to go parasailing, oxygen in tow

I shared with my wife and children my feelings about Murphy. I didn't mean for them to happen. I didn't want for it to happen. And I complained and questioned why it was that right after Stuart's death my emotions would be torn apart again watching Murphy suffer so much. But my wife saw the big picture more than I, as is always the case it seems.

"God sent her to you Kyle. There's a reason she came into your life."

And in hindsight now, I think she was right. Instead of agonizing over Stuart's death every day I looked forward to interacting with Murphy and trying to help in the small ways in which I could. Most of all I looked forward to just being around her. I can't adequately convey what she was really in written words but being around Murphy was uplifting. She is smart. She is funny. She is tough. And my own troubles seemed miniscule when I thought about what she was facing.

I became good friends with Lucy, too. I used to slip her the occasional French fry or bite of hamburger when I was in the lunchroom and Murphy wasn't there. When Lucy wasn't with Murphy she'd follow me around and sometimes come into my office. "Wow Lucy really likes Kyle," Murphy said. But then she came in one day just as I held out a bite of pastrami for Lucy to savor. "Ohhh, so that's it. No wonder she likes you...you've been feeding her while I wasn't looking.  Busted!"

Lucy waits for a fry

But things kept getting worse, and one day Murphy came in from seeing her doctors and informed us that they'd told her she could no longer work in the office anymore. Her condition had worsened to the point that the only thing which might save her life at that point was a double lung transplant, and even that wasn't a sure thing. "It's a long shot," she told me, "But the doctors say I have to stay home from now on because I can't risk getting sick."

It was another sad day for me and all of us at the office; the bright light she brought to us would no longer shine on us every day. But at that point the most important thing was giving her the best opportunity to save her life, and so that was the focus.

So the only option left at that point was a lung transplant or death. She and Dan had planned to be married sometime in the future anyway, but knowing that a transplant wasn't certain both  in terms of getting an organ or the organ being transplanted successfully, Murphy announced; "Dan and I are going to get married. Next week.  And I'm going to get married even if I'm in a wheelchair."

Murphy and Dan

And so she did. She planned an amazing wedding to an even more amazing man in just under six days, and pulled it all off.  Dan has been with her since her early college days, always supporting her every step of the way.

Wedding day

The reception was in a little Irish pub in St. Augustine. But as wonderful as the occasion was there was sadness too. In her father-daughter dance at the her dad had a backpack on; Murphy's oxygen tank. And as they danced and held each other close there wasn't a dry eye in the house.  My wife nudged me and directed my attention to one of the bartenders. He didn't know any of us--he was a complete stranger-- and yet there were tears running down his face too.  

Father-daughter dance

A week after her wedding Murphy was back in the hospital and by that time had less than 10% capacity of one lung left. A tracheotomy had to be done and she was being fed intravenously by that point. I went to see her two days before the surgery and she could no longer speak at all, she had to write down what she wanted to say and hand me the piece of paper.

Dan and Murphy, post-transplant

And yet through it all she still kept her positive attitude and never once complained. She never lost her smile or her will to fight. Without it, I have no doubt that she'd not be here today.

Dan, Murphy & Lucy, St. Patrick's Day 2018

Earlier this month, prayers were answered. Murphy underwent a double lung transplant and came through the surgery. But her fight is not over by any means. It may be a year or more before Murphy is able to be on her own and work again, and even that is predicated on everything going well. Meanwhile bills keep coming in, both medical and day-to-day. 

Post transplant.  Murphy-strong!

I wish that I could write just her a check and then she wouldn’t have to worry about bills while she tries to recover. I can't do that, but what I can do is ask you who read this to open your hearts and help in any way that you can. No amount is too small. Just please do whatever you are able to do in order to help the most amazing and deserving person I've ever known. And if you can't make a donation today please share this story with anyone and everyone you think might be able to.

Please also know that anything you give will go straight to Murphy. There are no middlemen and there are no charity employees to pay. Every dollar will go to her and her alone. Why not help her directly instead of sending money to some charity where your money may or may not really go to someone in need?

Thank you so much for taking the time to read this and more importantly, for helping Murphy. I promise you, a more deserving person you'll never come across.

Kyle E. Summerall